know what is going on Rosemary

Hi all thanks for those who email. I sure long for the days of all my travel with my working stoma (prior to it scarring in). It was so exciting sharing all my travles and talking about products and so on.

Tho the needed stent drain tube was removed by the place o went for tpn that blew my last picc vein then did not get me on home to, they doid rule out any late onset crohns as one doc had requested and they did find out thgat my stoma is angulated and has some bowel redundancy behind the stoma in the front abdominal wall place. As my muscle mass is severely atrophying, i am starting with a small peristomal hernia. Cannot belive all i have wrong. Right now am laying on my right side to get cghoxken broth out of me.

Sill on the liquids without the tube and am just praying all the liqyids keep coming out. RJ

Geez...a little miracle sure would be nice. So sorry for all you are going through.

Hi all

I so hope i don't catch anything from my care workers. Am so scared and so weak i have been having 24 hour coverage but i need to cut that back. BUT need someoine around just in case. So scared. This severe malnutrition goes on. Now my skin is breaking doiwn. I have some c onsults by mail going on and some in person. Have severe malnutrition issues. Tho surprisingly my red blood count heamtatacrit and hemaglobin Are up i guess due to the boost vhc. The drin tube was never able to be put back in so if that stoma slams shut it is all over. Assuming i canm continue to drink and at least get out liquid i have to drink more plain water tp pee more. I am getting dehydrated. So far the decaf coffee in which i dissolve the boost vhc come out as effluent. One would think stuff like carrot juice would come out too as it is just liquid but the tiny liote bit of fiber like less than 1 gram gets stuck behind the stoma. Jeesh! I just hope that the relocation of the stoma and its revuision is possible with all my adhesions. I do have so far one offer but they are not into helping me maintin my nutrition. I think this is all going to blast into some emergency before they consider it safe to elredo the stoma. At the 6 month mark. Some docs consider it 6 months from sept open suregry and some think 6 months from the november revision local to the stoma. If we are moving the stoma then i would think 6 months from the open surgery.

The only thing really off in my. Blood work is sugar at 177 but that was not fasting and aftre all these sugary boosts. Gotta get ano ac1 twst done. Some nights my sroma puts out a loit of diarrhea and some nights absoluteluy nothing. I dread to think of it slamming shut. So far every night i dream that i am whole and never went thru all thgis then i wake up. Heavens i would swtle for a working stoma so i could eat at this point. I envy all you with working stomas like mine used to. Loved my first one as stomas go. I could eat a wide variety of food. I think with all my adhesions even a new one may fail. I gave to bve very careful. But if emeegency status then i will not have much choice. Rosemary

Mrs B, i am home in western massachusetts. Are you nearby?

Am subsisting on the Boost VHC and have to mix it with coffee. Praying it all continues to come out. For whatever reason my teeth are decaying, severe wasting of all my body systems, dehydrated, tho so far blood levles have improved. I dread if tooth aches start. I sure have the edema that goes with starvation. Had i not had that original sigmoid resection for the incomplete rectal emptying and just stayed on laxatives i would still be able to eat nutricious foods and live life to the fullest once i got out of he bathroom in the a.m. After about 4 hours but hey who would care? I would be all good for the rest of the day! What a fate. Then there was the misread of the scan so it was not really my sigmoid colon blocking off my rectum in the first place! Sure wish that scan had been read right and i would not have gone down this road either. Even with a stoma that worked, hey i was even all good with that. Three closing in on me all in one year! Jeesh! I am really wondering IF any doc at any point when "adhesions soften"(if they do) then if location of stoma to the other side and massive adhesion take down i wonder if it would evwen work! That was the goal! Now i am wondering if i will make it 6 months to have the surgery, then if i do, then will it work?
Then..........? Let me know if you are close by. EsoR